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There is a growing amount of work applying qualitative methods for capability research with the objective of increasing the participation of ‘respondents’ in the production of knowledge. In this chapter we want to go a step further and illustrate how participatory approaches in research can contribute towards investigating which capabilities are valued, why certain choices are made, how capabilities are achieved and the role policy interventions can play in enhancing and generating capabilities, especially for vulnerable and marginalized groups. By drawing on the literature on participatory action research (PAR), we present our own theoretical framework to analyse and inform PAR processes from a human development and capability perspective. We named it the ‘participatory research capability cube’ due to its multidimensional perspective: (1) the expansion of the capabilities and agency of co-researchers; (2) the transformative characteristics of the knowledge produced; and (3) the democratic processes that PAR could enable both during and beyond the research process. Cross-cutting dimensions in our three-dimensional framework are issues of power and diversity. We then apply this framework to understand a PAR process in Kisumu, Kenya. We will conclude with some considerations on the suitability of our framework for a better understanding of PAR from a human development and capability perspective.
In 2015, the Old Fadama slum of Accra, Ghana was a government 'no-go zone' due to the generally lawless environment. Participatory action researchers (PAR) began working with three stakeholders to resolve complex challenges facing the community and city. In three years, they created a PAR cross-sector collaboration intervention incorporating data from 300 research participants working on sanitation. In 2018–2019, the stakeholders addressed the next priorities: community violence, solid waste, and a health clinic. The PAR intervention was replicated, supporting kayayei (women head porters) in Old Fadama, the Madina slum of Accra and four rural communities in northern Ghana. The process expanded, involving 2,400 stakeholders and an additional 2,048 beneficiaries. Cross-sector collaboration worked where other, more traditional development interventions did not. This PAR intervention provides developing-country governments with a solution for complex challenges: a low-cost, locally-designed tool that dramatically improved participation and resulted in projects that impact the public good.
To understand how community leadership can be incorporated in health research, this chapter tracks the first stages of a population size estimate in six Eastern Caribbean countries, with a focus on one of the countries, Grenada. Grenada is a small island state and an upper-middle-income country. While external aid previously funded much of the region’s HIV response, global health agencies are transitioning out to prioritize reaching the “end of AIDS” in high-prevalence, lower-income countries. However, criminalization and discrimination contribute to lack of resources for key populations in middle-income countries. In Grenada, abrupt US aid withdrawal left community groups dormant, without funding or staffing. In past studies, after the data was extracted, local groups saw no results of the research. A regional civil society group, Caribbean Vulnerable Communities (CVC), will lead this new population size estimation study. An ethnographic study of the CVC study highlights the challenges with finding and counting hidden key populations. CVC must restart old networks and rebuild trust. The activists negotiate for power and control of the data, using their arduous research to position revived community groups at the center of national HIV responses; hoping that the research will produce “something more than just data”.
As global health agencies and donors shift their focus away from single-disease responses and towards the broader umbrella of universal health coverage, the advocacy movement that has achieved so much in the HIV response is now beginning to wrestle with finding new ways to reach out to and partner with broader and more diverse constituencies. Where to begin this renewal? The author suggests drawing on the example of the CVC study to expand forms of community mobilization that incorporate data-gathering through participatory action research, bringing together diverse grassroots constituencies to document and understand local needs, and to establish trust with marginalized and hidden communities. Richer data can reveal hidden realities which international organizations need for programming. At the same time, individuals can also use that same data to make institutions visible: their strengths and gaps, their rationales, assumptions and pressures, what the institution thinks counts, and what they may sometimes miss.
This chapter returns to the CVC study in Grenada. Faced with pressure to complete their ambitious six-country size estimation study before their grant ended and donors transitioned out of the Caribbean, CVC focused its efforts on strong engagement of community field workers, who had the trust of their peers and could accompany them in overcoming the numerous barriers to participation. Working through networks of trusted community gatekeepers, CVC and local partners strengthened the role of community-based organizations in the research. The data was difficult to get, but the work of indigenous field workers enabled the researchers to gather granular data about previously undocumented populations including transgender people, as well as documenting incest and other hidden forms of gender-based violence, and to form stronger bonds between civil society and health officials.
Using post-colonial theory, we sought to determine what current falls prevention recommendations are offered by local falls prevention programmers (LFPPs) to reduce fall rates among Inuvialuit Elders in Inuvik, Northwest Territories, Canada, and to understand how falls prevention programs for Inuvialuit Elders can be co-created with participants to be culturally safe. The findings showed that Inuvialuit Elders and LFPPs in Inuvik recommend adding environment assessments and modifications, physical activity, and education for Elders and caregivers to existing programs. They also felt that for culturally safe falls prevention programs to occur, LFPPs must include the following strategies: establishing trust and rapport within the community, including both Indigenous and non-Indigenous interventions in falls prevention programs, and training others on cultural safety practices.
The focus of this article is understanding the perceptions that Canadian Indigenous teachers and students have on a novel physical activity teaching method that is utilised in the classroom. We explore the role that physical activity plays in the healthy growth and development of children, with special attention to Indigenous children. Through participatory action research and qualitative methods, Indigenous teachers and students share their thoughts on physical activity in the classroom and the barriers and facilitators that exist to implementing classroom physical activity. This work is discussed in the context of the recent Truth and Reconciliation Commission of Canada and provides the reader with tangible suggestions for movement integration in the classroom.
Alongside associated forms of socially and politically conscious food production, community food growing is routinely connected to a wide range of social and environmental benefits. However, robust evidence in support of these associations remains scant, and while the conversation has shifted in recent years to take account of the sometimes unintended or negative aspects of these activities, no consensus has been reached about how such forms of food growing should adapt to new conditions, or be scaled up to maximize their positive impacts. A July 2016 conference was organized to address this strategic shortfall. This themed issue presents the papers resulting from the conference.
This article describes our qualitative research on the follow-up of 10 children, 5 years into recovery after cardiac surgery. The research was driven by a multi-disciplinary team of medical anthropologists, cardiologists, and an intensive care specialist and was based at the Red Cross War Memorial Children’s Hospital where they underwent surgeries. The research sought to answer two questions; first, could we successfully maintain contact with and follow up the children; the second – which will be answered in future papers – asked what life was like for them and their families during surgery and later recovery. The results are presented as a discussion on the themes that arose in our engagement and analysis and not as clinical evidence. These showed that elective surgery although significantly delayed was successful, and all children were followed up at their medical appointments. The researchers, however, were unable to establish follow-up with all families over the duration of the study. In the final round of interviews in the respondents’ homes, of 10 children, we remained in contact with seven. The discussion argues that effective communication and access to these children was often compromised by their coming from the poorer communities in the Cape Town metropolitan region, making them even more vulnerable during their recovery periods.
Transitional justice seeks to address legacies of violence around political transition from authoritarianism and armed conflict. It does so in ways driven by a global discourse that is prescriptive and often remote from the contexts in which it is articulated and the populations it claims to serve. Transitional justice is also embedded in teleological liberal approaches to transition, with a perceived endpoint of liberal democracy. Critical approaches to transitional justice have used qualitative methodologies to understand the agendas of those—notably victims of violence—that transitional justice foregrounds, and to demonstrate that transitional justice mechanisms often serve elite agendas, while minimizing the agency of socially excluded populations. An alternative, minimally explored route to victim engagement with such processes has been the mobilization of victims and victim organizations, an emancipatory approach that seeks to provide a space for victims to engage in transitional justice debates on their own terms. Here, a research engagement with a victims’ organization through a Participatory Action Research modality is described in which researchers support victim engagement in peer research to catalyze a social movement of victims in post-conflict Nepal.
Systematic evaluations of knowledge translation interventions in nursing homes to improve practice are scarce. There is also a lack of studies focusing on creating sustainable evidence-based practice in the setting of residential dementia care.
The aim of this paper is to describe a model for implementing national evidence-based guidelines for care of persons with dementia in nursing homes. The secondary aim is to outline the nursing home staff experiences during the first year of the implementation process. The intervention had a participatory action research approach. This included educational activities such as: (i) thematic seminars introducing national guidelines for dementia care, (ii) regular unit-based seminars; and (iii) later dissemination of information in reflective seminars and several days of poster-exhibitions. Areas of practice development were selected on each of the 24 units, based on unit-specific needs, and a quality improvement strategy was applied and evaluated. Each unit met ten times during a period of eight months. Data for this study were extracted from the reflective seminars and poster presentations, analyzed using a qualitative content analysis.
Findings showed that implementation of guidelines were perceived by staff as beneficial for both staff and the residents. However, barriers to identification of relevant sources of evidence and barriers to sustainable implementation were experienced.
One of our assumptions was that dementia nursing homes can benefit from becoming knowledge driven, with care practices founded in evidence-based sources. Our findings show that to be partly true, even though most staff units found their efforts to pursue and utilize knowledge adversely impacted by time-logistics and practical workload challenges.
Developing and implementing effective strategies to increase influenza vaccination rates among health care personnel is an ongoing challenge, especially during a pandemic. We used participatory action research (PAR) methodology to identify targeted vaccination interventions that could potentially improve vaccine uptake in a medical center.
Front-line medical center personnel were recruited to participate in 2 PAR teams (clinical and nonclinical staff). Data from a recent medical center survey on barriers and facilitators to influenza (seasonal, pandemic, and combination) vaccine uptake were reviewed, and strategies to increase vaccination rates among medical center personnel were identified.
Feasible, creative, and low-cost interventions were identified, including organizational strategies that differed from investigator-identified interventions. The recommended strategies also differed by team. The nonclinical team suggested programs focused on dispelling vaccination-related myths, and the clinical team suggested campaigns emphasizing the importance of vaccination to protect patients.
PAR methodology was useful to identify innovative and targeted recommendations for increasing vaccine uptake. By involving representative front-line workers, PAR may help medical centers improve influenza vaccination rates across all work groups. (Disaster Med Public Health Preparedness. 2013;0:1–7)
Concerns over low uptake of cervical screening among minority ethnic women have spurred much research and practical activity to address the problem. Due to theoretical and methodological difficulties, research in this area has tended to focus on the communication deficit of women, without addressing the social context. This has not only hindered a wider theoretical understanding of the problem but, also, has perpetuated ineffective health promotion practice in this area. Using a participatory action research (PAR) approach, the project ‘Woman-to-woman: promoting cervical screening to minority ethnic women in primary care’, tackled the problem by involving both health professionals and women from the communities. Working in partnership, both professional and lay participants identified the problems from their own perspectives and generated solutions to resolve them. An intervention strategy was formulated in which bilingual women from the communities were recruited as community health educators to provide an informed link between their respective communities and the primary care sector. The outcomes of the intervention were evaluated by all participants. This paper aims to introduce PAR as an alternative approach by presenting an overview of the study. It begins by highlighting some of the common theoretical and methodological problems encountered by researchers; and then introduces the research framework of PAR and describes the research processes. A case observation is presented to illustrate the depth of understanding of the screening processes that can be obtained using this approach. The project has demonstrated that applying PAR cannot only lead to meaningful discoveries and insights into the problem of minority ethnic women and cervical screening, but also change in health promotion practice, which would have been difficult to achieve using a conventional research model. However, this study has also revealed major limitations of PAR, which need to be addressed if the approach is to be further developed.
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